Living With the Threat of AMD: A Spouse’s Story
by Sandra Semple
My husband was diagnosed with wet AMD in one eye some 3 years ago. As is often in these cases, there was a long delay in actually getting a diagnosis. Much of this delay was with the (privately paid for) specialist who was totally reluctant to tell us what the diagnosis was, even though he had scheduled a laser treatment for it. (At that time PDT was not routinely available in the United Kingdom). The laser treatment failed, and all the central vision in my husband’s left eye was destroyed at once. Whereas initially he had the “wavy lines,” he then had an extremely large blind spot.
At first my husband thought he had a brain tumor and thought this for some time. However, I did some research on the Internet (thank Heaven for the Internet!) and realized he had wet AMD and all the consequences that entailed.
My husband crumpled after the failed treatment. He expected his right eye to go the same way almost immediately and began to grieve for his lost sight even before it actually happened. I didn’t go to pieces immediately, but over the course of the next few months I coped less and less well with the idea of having a “blind” spouse. Even though I read about all the reading aids, etc. I could see how difficult our life was going to be, and for a long time could concentrate only on the down side.
Eventually, I was coping so badly that a friend of mine suggested I ask for counseling at the university where I worked. This was a confidential service which she spoke highly of, having used it herself when she suffered a bereavement. What I was going through was also a bereavement of sorts: the loss of a secure future (well, who has one of those anyway), thoughts about how bad our situation would be, a sense of many losses, etc.
The counseling came through quite quickly, and I slipped away from my office desk for an hour. I sat down with my counselor (a woman in her 50s) and poured my heart out about how low I felt, how bad our situation was, etc. I shed many tears and, as one might expect, she passed me the tissue box. We agreed that we would meet up for six sessions to talk things over.
At the start of the second session, my counselor said that she had something she needed to tell me. It was not usual to share confidences with the person being counseled, but she had thought long and hard about what she needed to tell me. I was rather mystified about this.
She told me that she had had Stargardt’s disease since her early 20s. She had no central vision and relied on specialist binoculars to travel to work. However, once at work she got around nicely, thank you. She had studied for her counselling diploma with everyone else, but had had her text books transcribed on to audio tapes by the Royal National Institute for the Blind. She had married and had three children and some grandchildren. She and her husband had just come back from a holiday in Europe, which they had thoroughly enjoyed.
Wake up call! I had gotten no idea from the first session that there was anything unusual about her at all. I realized this was not a death sentence and not about living in dark rooms and doing nothing with your life. It was about making the most of things, being glad you were alive, and getting on with it.
I can’t say I have fully managed to take all this on board, and I am sure my husband still has his bad days. At the time of this writing, my husband has been doing all the right things (AREDS, leafy green vegetables, lutein, orange vegetables, losing weight, taking statins–you name it he does it, mostly thanks to things we have read and subsequently researched here. We are currently totally remodeling our apartment, and we have built in as many AMD-friendly changes as we could. Lots of contrast where needed, good and appropriate lighting.
We do expect that one day those wavy lines will appear in the right eye. But this time we have a load more things to try: PDT, Macugen, and anything else that comes up. And when the time comes, we will give them our best shot.
In the meantime, we both took early retirement and live for today. And my counselor still works at the university.